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Health Care Reform: Principles for the Parkinson's Community

By Robin Elliott

By the time you read this edition of the Parkinson’s Disease Foundation (PDF) News & Review, the final version of the US health care reform bill may already be law, or at least on the President’s desk awaiting signature.  At this writing, we do not yet know which elements will have survived the give-and-take of the Congressional process or which will have been dropped.  

As a non-partisan organization, PDF supports a balanced, bipartisan and comprehensive approach to health care reform.  More importantly, we believe that whatever the shape of the final document, it will be vital to understand how it impacts the Parkinson’s disease (PD) community.  So we asked ourselves: what should the principles be for a law that is fully in accord with the complex and varied needs of all members of our community?

After consulting with other nonprofit organizations and seeking the advice of people with Parkinson’s, including the members of our People with Parkinson’s Advisory Council (PPAC) — the result is Parkinson’s Disease: Principles for Health Care Reform, a list of 13 principles.

We hope these principles will provide some common language for the community to participate in the national conversation. 

In a future issue of News & Review, we will assess the new health care bill by identifying how well each principle is reflected in the language of the legislation.  

We also invite you to give us your feedback on this issue, by emailing us at info@pdf.org.  We look forward to hearing from you!

Mr. Elliott is Executive Director of the Parkinson’s Disease Foundation.

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Parkinson's Disease:

Principles for Health Care Reform

In order to meet the health care needs of people who live with Parkinson's disease and their families, the Parkinson's Disease Foundation believes that an acceptable national plan for health care reform should meet the following criteria:

  1. Assuring accessible and affordable coverage for all essential health services, recognizing the special needs of people who live with long-term neurodegenerative conditions such as Parkinson’s disease. 
  2. Assuring that no one will be denied coverage or charged a higher premium because of a pre-existing condition, including a diagnosis of Parkinson’s disease.
  3. Assuring that out-of-pocket costs to the person with Parkinson’s — including deductibles, co-payments, co-insurance and the expenses produced by annual or lifetime caps — are kept affordable.
  4. Preserving an acceptable level of choice for all patients in health care provider relationships and among all health insurance plans, whether public or private.
  5. Eliminating the current 24-month disability waiting period for Medicare coverage.
  6. Improving drug benefits provided through insurance programs, both public and private — including removing the “doughnut hole” in Medicare.
  7. Assuring services and support for people with cognitive and mental health issues that may be due to Parkinson’s disease or to the medicines that are used to treat it.
  8. Improving coverage for long-term care and services, including nursing home, in-home and community services.
  9. Providing coverage for accessible and necessary medical equipment — including walkers and other assistive devices — that are needed by people with Parkinson’s.
  10. Improving the coordination of medical care for people living with Parkinson’s and other conditions that often require the services of multiple health care providers.
  11. Assuring a commitment to reducing the disparities in access to health care that currently exist in such categories as income, geography and racial/ethnic/linguistic identity.
  12. Providing financial and other incentives to improve the level of education and training in Parkinson’s disease and other degenerative conditions among health care providers, including physicians, nurses and allied health professionals.
  13. Exploiting the potential of new communications technologies — such as electronic medical records and telemedicine — in the provision of medical and other health care services.

Download the Principles for Health Care Reform